Yesterday Inga went with her brother on skating rink to see how he skates. She was very excited about that much less we have just watched speed skating in TV during Olympic Games in Korea. Unfortunately her joy has disappeared the moment she spot high fence around ice rink. She looked like she wants to […]

Apart from the fact that Inga is a person who suffers from SMA, she is above all our beloved four-year-old girl, having her dreams, joy, sorrows and ideas. The ideas… Her last week idea was simple: “I want to be a hairdresser”. From that thought she went straight into action – her beautiful curly fringe […]

The last week has passed under the mark of the International Scientific Congress on SMA in Krakow. Almost half a thousand participants, dozens of presentations, poster sessions, meetings with pharmaceutical companies, working dinners and backstairs conversations. Almost all doctors and scientists responsible for develop the treatment of spinal muscular atrophy in the world have appeared […]

It’s been 100 weeks since the diagnosis. 700 days. Days devoted to Inga and its struggle with a terrible disease. The days during which Inga stopped walking, stopped standing by herself, stopped climbing small chairs, stopped crawling with strength and happiness. We were getting weaker slowly every day – only photos and videos from time […]

Today Inga joined great event in Newport: Great Orchestra of Christmas Charity finale – the biggest and most know charity movement in Poland. They help new born babies. They helped Inga once she was born. Now it was a her revenge. She enjoyed event much, donate some coins to collect box and get candyfloss for […]

Time still goes by… Two years ago we have heard for the first time about SMA. We wish we could forget about that but SMA acts and takes Inga’s strength. She cannot stand without equipment anymore. We have noticed recently that she started to struggle with crawling. She crawls slower, unwillingly, she tires easily. She […]

All the best in New Year! May that new 2018 be better, much better than previous! May all your dreams come true, we have only one… Year 2017 was a good year. A year of hope. The first SMA drug has been approved (Spinraza/Nusinersen) – longed-for, hoped-for, looked-for treatment. SMA has stopped to be terminal […]

We would like to wish you Merry Christmas and all the best for New Year. We thank you for all your support and help – you are our Angels. Thank you! Our fight against SMA goes on…